Friday, May 23, 2008

Why am I here?

Why am I here?

Good question.

There are at least half a dozen times in my life I should’ve been either dead or paralyzed. I’m not either one, which means there has to be a reason I’m still standing.

After a lot of contemplation, I realized that if God wanted me to go back to work full-time, He would work a miracle to get me there. Instead, I’ve recuperated just far enough to write letters to elected officials and educational blog posts, and once in a great while make a personal appearance at a CFS/fibro PR event. That seems to be what He wants me to do, because once I made the decision to devote time to activism, things started to fall into place. If I wasn’t supposed to be doing it, it wouldn’t have come together that easily.

I know that everything you write online is archived somewhere and will be available permanently, therefore, I had to be positive that I was not jeopardizing my ability to get hired somewhere before I started writing about CFS in ways that were google-able under my name. Once a doctor opined that I’d never return to full-time work, there was no such risk – I make significantly more per hour working from home as a proofreader than I would with a part-time office job, so I’m not likely to be applying for a part-time office job where they’d be googling me to get the dirt I don’t want to tell them. (Potential proofreading clients get enough background information off my website that they don’t usually google me further – it’s not like they’re offering me an on-site job where I’ll be a representative of the company to the world, what I do is strictly behind-the-scenes and no one is aware that I am doing it other than the client herself; my name isn’t put on the finished product.)

I basically have nothing to lose at this point by speaking out.

There is, potentially, something to gain: someone may offer me a paid writing or blogging job – with a million CFS patients in the US alone, probably 20 million worldwide, that’s a big market for the information. Not just the patients, but their friends/relatives/employers who might believe from me what they won’t believe from the patient. I’ve had people who didn’t believe me when I said it, but then saw or heard something about CFS elsewhere that corroborated what I’d told them, and concluded that it couldn’t be a figment of my imagination if someone I don’t know described the same thing. Hopefully, some of my readers will point people to my blog to back up what they’re saying, and I can lend them some credibility.

One thing is certain, I’m still here because I’m here to help.

Thursday, May 22, 2008

But my cousin's neighbor's niece works from home!

When I first became disabled and was deluding myself into thinking that by working a couple hours when I was awake at 3 AM, a couple hours at 9 AM, a couple hours at 3 PM, a couple hours at 9 PM, I could work 8 hours a day, I did look into jobs that I thought should be able to be done via telecommute. Unfortunately, what I got from local employers was arguments for why it would not work for me to be somewhere other than sitting at a desk where they could see me and be sure that I was actually working. Even the local agency that helps the disabled find jobs refused to let me work via e-mail/fax/phone; you know you’re in trouble when a placement agency for the disabled sarcastically wishes you good luck in finding a job!

Every time someone said to me "I know someone who works at home", I asked them to make inquiries for me. OK, you know for a fact that XYZ Company hires people to process paperwork at home, find out how I apply for such a job, name and phone number of the person I should call. And every single time, they would come back to me with the information that this turned out to be a special accommodation for a valuable long-time employee that the company didn’t want to lose entirely when either health issues or caregiving responsibilities required them to stay home for an extended period. At the very least, I would have to work in their office for 6 months or a year before they’d consider letting me work at home; in many cases, I’d have to work there for 10 or 20 years, as Cousin Susie did, and hope that they loved me as much as they loved Susie. It’s great that some companies offer that to long-time employees, but it doesn’t help those of us who have health problems NOW and need to work from home from the first day. And even though they’d seen that it was possible for the job to be done from home, none of them were interested in hiring someone to work from home on a permanent basis; one of the people who was working from home had a terminal illness, so she specifically asked her supervisor about hiring me to fill her job when she could no longer work, and they made it quite clear that they did not see any cost-benefit to the company, and her replacement would work in the office, end of discussion.

Then there were the jobs advertised as "work at home!!!", which turned out to mean "you’re going to be out of your home 40 hours a week at meetings or sales calls, but you can write up your paperwork at home". Again, for someone who needed to stay mostly horizontal due to fainting spells, and doesn’t drive, that was not the sort of "work at home" that suited my needs.

There are plenty of work at home scams, but if you look into it, you find that there are very few legitimate work at home jobs that in fact mean "100% at home". It wasn’t for lack of trying that I was still unemployed when my Unemployment ran out, but that the type of job that my health required at that time simply wasn’t available. ADA does not require employers to offer a work at home option, and, in fact, there are some court decisions that say that it is very difficult for those judges to imagine any sort of job that could be done 100% from home without occasionally needing to go to the office for some reason. (Unfortunately, the courts are not consistent on this issue: according to the ADA decisions, what I need goes beyond "reasonable accommodation" and I cannot require an employer to provide it, therefore, I am too disabled to work under ADA, but the SSDI judge thinks some employer "should be happy" to accommodate me "because of my experience and qualifications", therefore, I am not disabled under his personal definition, because he imagines this is an ideal world where employers will do more than is legally required of them, even for a brand-new employee.)

Since no one was willing to hire me on my terms, I hired myself. I started my own business in which all the office equipment, all the office files, all the everything is, in fact, 100% in my home. Since I’m the boss, I don’t get in trouble when I need to work lying in bed instead of at a desk so I won’t pass out while doing it, or when I need to interrupt a project to take a two-hour nap, or when I have to take the laptop into the bathroom for an hour-long bout of digestive distress that would otherwise cause me to miss the deadline.

Ironically, after having multiple law firms in town question "if you’re working from home, how do we know you’re working as many hours as we’re paying you for?", I found that lawyers in other cities were perfectly willing to trust me not to pad the bills ... and they were paying far more per hour to hire me as a freelance independent contractor than I would have been paid as a part-time employee! Unfortunately, since I’m now mostly home-bound, I can no longer do the sort of paralegal work that the out-of-town lawyers were hiring me for, and I’m still running into the argument from the local firms that they will not hire me to review/summarize/index documents working from home, because they somehow think it can only be done efficiently in their office.

The reason I’m forced to beg for Disability benefits is because I desperately want to work doing the job I loved and did for decades, but no one wants to hire me because I cannot do the job in the same way as a healthy employee (i.e., sitting at a desk in their office), and ADA doesn’t give me the ammunition I need to force them to let me work at home.

Somewhere, there may be an open-minded lawyer who can see the cost savings to having me pay for my own office space, my own computer, my own printer and copier supplies ... but I haven’t found him yet. I’ve called around town, I’ve written letters, I’ve put an expensive ad in the legal community’s newspaper, I’ve put ads on legal websites, and I’ve put up a website of my own. Now I’m putting the cost benefits in my blog, for just one more attempt at finding employment as a paralegal reviewing records at home.

Before you condemn me for not having a "real job", why don’t you make some phone calls and see if you can find someone in your social circle willing to hire me? If you can, I’ll have a real job with assured minimum hours, and an income sufficient to disqualify me from SSDI benefits. But I’m betting that you’ll hear the same thing I did, that "100% work at home" simply isn’t acceptable to employers. Maybe if my detractors do their best to find me a job I can do within my limitations, they’ll find out the hard way that the work world isn’t as Utopian as they think it should be when it comes to hiring the disabled. When the government told employers that it’s illegal to discriminate against people due to disability, they simply found other reasons instead; for years, they did it to people of color, and to women, and to people of alternate sexual orientations – they already have a whole long list of excuses they can use that have nothing to do with something that gives you grounds to sue for discrimination. (The simplest being "both candidates were equally qualified, but I could only hire one, and you lost the coin toss.")

It’s all very well and good to tell me that you can imagine a situation in which I could work at home, but when the imaginary isn’t reflected in the real world, it doesn’t do me a bit of good. What I’m doing now is as best as I can do under the circumstances, and will continue to be the best I can do until someone offers me a real job (not a hypothetical one). "Why don’t you do X?" means nothing if there’s not an actual employer willing to go along with the idea.

Wednesday, May 21, 2008

Dr. Bell on CFS as Mitochondrial Dysfunction

ME/CFS is a disorder involving the cells' energy-producing
mitochondria - but it's a mitochondrial disease like no other,
Dr. Bell believes.

Why isn't it diagnosed, classified and studied like other kinds of
mitochondrial disease? That may be "just around the corner."

Read the article at

More on the CFS-Polio Connection

From: Jane Colby



Hi guys. We are now officially in ME Awareness
Month 2008.

On Friday 16 May the Trust will be in North Wales
with the Clwyd ME Group, one of our Partner Groups
around the UK. If you can, come and meet us there.

Jane Colby is guest speaker at the Group's ME
Awareness Conference to be held at the Civic Hall,
Connah's Quay on 16th May. She will speak on the
polio/ME link, on the enteroviral work of Californian
virologist John Chia MD, who granted her an
interview for the forthcoming Colby Report, and on
the potential for a diagnostic test and treatment.

Excerpt from Jane's article in the Clwyd ME
Group's newsletter:

"Betty [Dowsett] had diagnosed me in 1985 and I
only became involved in writing about ME when she
asked me for help with children, and we became
colleagues. That was when I really started
investigating, and I discovered that in the 1950s an
epidemic of polio in Hawaii actually involved many
enteroviruses, not just one poliovirus as most
laymen had believed. Whoever heard of polio not
being caused by a poliovirus?

"It turned out that many of these polio cases were
diagnosed as non-paralytic polio - they didn't
paralyse people but it seems they did cause a
variation that was indistinguishable from ME
- maybe
ME itself. I was intrigued, investigated further and
ended up writing the book [ME - The New Plague].
Frankly, I found it mind blowing."


The Trust's new Alerts system. Be kept up to date
with all our news. Full information is in the ME
Awareness Month issue of Vision, out shortly.

Jane Colby
Executive Director
The Young ME Sufferers Trust
PO Box 4347
Stock  Ingatestone
Essex  CM4 9TE
Tel 0845 003 9002

The value of online support groups

Electronic support groups, patient-consumers, and medicalization: the
case of contested illness.

J Health Soc Behav. 2008 Mar;49(1):20-36.

Barker KK.

Department of Sociology, Oregon State University, Corvallis, OR
97331, USA.

PMID: 18418983

This article illustrates the role electronic support groups play in
consumer-driven medicalization. The analysis is based on an
observational study of a year in the life of an electronic support
group for sufferers of the contested illness fibromyalgia syndrome.

The analysis builds on and extends scholarship concerning the growing
influence of lay expertise in the context of medical uncertainty by
showing how the dominant beliefs and routine practices of this
electronic community simultaneously (and paradoxically) challenge the
expertise of physicians and encourage the expansion of medicine's
jurisdiction. Drawing on their shared embodied expertise, participants confirm the medical character of their problem and its remedy, and they empower each other to search for physicians who will recognize and treat their condition accordingly.

Physician compliance is introduced as a useful concept for
understanding the relationship between lay expertise,
patient-consumer demand, and contemporary (and future) instances of

Looking for a support group?


I have collected links to ME organizations around the globe. The site is in Swedish, but I think most people will be able to use the list of ME organisations. The organizations are grouped by country or continent. Se here:

/Kasper, Sweden (  )

Tuesday, May 20, 2008

But why can't you work?

One of the questions I deal with frequently is why, if I can do things like blog, I can’t work. The answer is that people confuse ability with stamina, or can’t understand that there are varying levels of ability.

The Disability benefits system is set up to deal with concepts like "I cannot type ever again because my right hand is paralyzed". The boxes say Yes/No, there’s no option for "sometimes" or "badly".

I can type about 3 pages before my muscles start to protest and I have to stop using my hand for at least an hour or however long it takes until the pain goes away. This is enough to generate a blog post or a few e-mails, but is not good enough to work in an office, where I would have to continue typing until the muscles fail entirely and the hand becomes useless for the rest of the day; I’m not going to keep an office job if I can only work a few minutes out of every hour.

ADA says I’m entitled to a job that I can do comparably to a healthy person with "reasonable accommodation", but it doesn’t entitle me to a job where I could produce only a fraction of what a healthy person could do. At one point, I was able to use the computer for 5 minutes or less each hour before my symptoms got worse. I saw that I spent 55 minutes of each hour lying down in a dark room until I could sit up for another 5 minutes; other people allowed their imaginations to fill in the blanks that if they saw group posts from me at 12, 1, 2, 3, 4.... that meant that I was online continuously for hours on end. In fact, it took me 12 hours to accomplish what a healthy person would do in one hour. There was simply no way for me to achieve production comparable to a healthy person at that stage of the illness.

Then there’s the question of the spectrum of ability. I earn my living as a proofreader. That means being able to spot when there’s a period missing, or to think clearly enough to recognize a word is missing (or, conversely, that a word is repeated). Skimming e-mails is a whole ‘nother matter entirely: I’m not going to get fired for not catching a mistake. How many people read their personal e-mails first thing in the morning before their eyes are completely open, or late at night when they’re too tired to do anything else? I’m no different; when I’m not alert enough to work, I can still function well enough to flip through a bunch of e-mails that don’t require a lot of concentration.

I’m a 100-word-per-minute touch typist who used to test at 99.99% accuracy. That means that I can close my eyes when they’re burning (as they are right now) or my vision is blurry (a common CFS symptom which, obviously, prevents me from proofreading accurately or efficiently) and still produce a decent blog post or e-mail to a friend. I’m not using blogging or personal e-mails to avoid working, I’m doing them because I can’t work at the moment, though I still maintain enough residual function to do something that requires a much lower use of vision (or none at all).

Stamina (both physical and mental) is a big problem for CFS patients, and the thing that is probably least understood by non-patients. The SSDI judge decreed (in his infinite medical "expertise") that I could not have CFS because I had a normal amount of strength on a two-minute test. CFS alone does not cause your muscles to waste away; it causes them to fail from overuse. Imagine yourself in the weight room; you might be able to lift 300 pounds once, just to prove that you can, but you wouldn’t be able to do it twice, and you certainly wouldn’t be able to do it non-stop for 8 hours, because it’s too heavy for you. The same with CFS: those of us who use stretching and resistance exercises to avoid deconditioning will test normally on a short test, but a repeat test or an extended test will show we’re not able to continue as long as a healthy person, and scientists have even found a medical reason that explains why we’re still affected the day after exercise, our muscles really don’t rebound as quickly as healthy muscles. So, on the surface, it appears that we can do what normal people can do, but in reality, we can’t do as much of it. Not enough to use that ability to hold a job.

Another myth is that CFS patients are tired all the time. In fact, if you’re tired all the time, it means you’re pushing your limits. Once I learned my limits and made a conscious effort to stay within them, I started to feel pretty good, but I felt good because I wasn’t trying to do as much. The minute I say "hey, I feel good enough to do more", I’m going to exceed my limits and hit that wall of exhaustion that will make me feel tired for a few days. Dr. Ellen Goudsmit has written extensively on the fine art of pacing, where you work in short bursts and then rest. Pacing does not miraculously allow you to increase your total productivity, but it does prevent you from getting completely wiped out, so that overall you feel better because you’re continuously "topping off the tank" rather than stopping only because you’ve "run out of gas". There’s a daily limit on my expenditure of energy, and just like with your spending money, I can spend $20 in one transaction, or I can spend $5 each in four transactions, but I can’t spend $25 without going bankrupt; again, research has shown that patients can push themselves to increase their activity level for a few days, but eventually, like being overdrawn at the bank, it gets to be too much and further withdrawals are declined. Patients simply could not maintain the higher activity level beyond a few days without getting worse.

A few years ago, I felt good enough to accept a half-time office job. Three days later, I was back in bed, because half-time plus a commute was beyond my limit, no matter how excited I was about getting the job and how eager I was to get back to work. It took about a month to return to baseline, and again, this is not a "reasonable accommodation" under ADA ... you have to be able to work a predictable schedule, not "work when able" and then be allowed to take several weeks off because you’ve done too much and made yourself sicker.

Similarly, the Social Security Disability system is supposed to look at the whole picture, if you can work a full day on Monday, but then can’t work again till next Monday, you’re supposed to be deemed disabled, because you can’t work a 40-hour week. Unfortunately, there are some judges who can’t get their heads around the notion that the ability to do it once is not the same as the ability to do it every day; my judge focused in on the fact that I was able to go out for a couple hours to do something enjoyable (after days of resting so I’d have enough energy to go out, and with substantial after-effects for several days) and extrapolated that if I could go out for a couple hours, that meant I could work full-time; something my actual schedule for the week before and after did not support. He chose to look only at the snapshot of one moment in time that proved I was not entirely bedridden/homebound (and, in fact, the law does not require someone to be entirely bedridden to receive benefits – according to Reddick v. Chater, if you have to take off as little as one day a week to rest, and can work the other four days, you qualify as "disabled"). Pointing out all the fallacies in my judge’s written decision would take hours: he misrepresents facts (he thinks I’m married, I think I’m not) and repeatedly relies on illogic to support his conclusions; inconvenient facts and testimony are simply not mentioned – although there was a VocRehab expert at every hearing, only one is ever mentioned, and he’s misquoted.

Like many CFS patients, I’m a Type A overachiever. It drives me batty to do nothing. If I can read e-mails for even just 5 minutes out of an hour, I’m going to do it, just because it makes me feel like I’m accomplishing something. But it doesn’t mean that I can work successfully. It means only that I can do a little light reading for 1/12 of my waking hours.

Which brings us to another myth, that CFS must be the same as depression because all patients do is sleep 20-24 hours a day. In the active stages of the virus, when you feel like you have the flu, you do sleep a lot because your body demands it. But the flu is not depression; there are all sorts of symptoms that differ, just as there are many divergent symptoms between CFS and depression. In fact, it’s often just as likely that the patient suffers from "tired and wired" – physically, you’re exhausted enough to collapse into bed, but once you get there, you can’t get to sleep. One of my doctors confused the notion of being in bed 12-15 hours with sleeping 12-15 hours at a stretch, and thought I was contradicting myself when I said that I only slept about 2 hours a night; in fact, I spent most of my time in bed looking for a position comfortable enough to get to sleep, and it’s typical of fibromyalgia to sleep only 1½ to 2 hours at a time, but he didn’t know enough about either disease to recognize that "in bed" and "asleep" are two very different things. I started making a point of going online when I was awake at 3 AM, just to be able to document that I was, in fact, awake; prior to that, when I had pressed the point that I’m in bed not sleeping, he’d given me some prattle about "sometimes when we think we are awake, we are really asleep", and the easiest way I could think of to prove that I really was awake and not just imagining things was to respond at 3:15 AM to something that a friend in Australia or England sent at 3:05 AM. Since she hadn’t written it yet when I first went to bed, it wasn’t something that I wrote before bedtime and scheduled AutoAOL to post in the middle of the night to make it look like I was awake; the only way for that response to go out at 3:15 AM was for me to have been awake ten minutes earlier when her e-mail came in. At that point, the proof was there that I was not sleeping, and how many nights a week I was not sleeping through the night, but the doctor refused to accept it. It didn’t fit into his misunderstanding of what CFS is.

However, having re-read some of those late-night e-mails when I was more clear-headed, it became apparent that my over-ambitious theory that if I was awake at 3 AM, I could work at 3 AM, was a misguided delusion of my driven personality ... if I had turned that slop in to an employer, it would not have been acceptable quality.

And that’s what it really comes down to: not whether you can go through the motions, or get to an office, but whether an employer will be happy with the quality and quantity of work that you’re producing. For me, the answer is No. I can work successfully 6-10 hours a week. When I try to push it to 12-15, I make myself sicker and the quality suffers enough that I lose clients.

And it shouldn’t be assumed that because I can blog or knit or go out for a while, that that proves that I could be working instead, because typically I do those things after realizing that I’m not able to work as a proofreader that day. With my eyes burning, I could neither see nor concentrate well enough to proofread, but it was a great day for going out to lunch and listening to music, neither of which requires me to see well enough to know whether there’s a period at the end of this sentence. So, it didn’t cost me any work time to go out for an hour or two, because I would not have been able to work successfully anyway.

Monday, May 19, 2008

Why this blog?

Some years ago, at a friend's funeral, it was mentioned that her life's philosophy was:

"The purpose of life is not to be happy, it is to be useful" - Leo Rosten

The friend sitting with me said that quote reminded him of me, that being useful made me happy, and he felt I was troubled when I could not be useful somehow.

So, here I am, being useful in the only way I can.  I can't march on Washington, I can't do scientific research, but I can reassure my fellow patients that what they're experiencing is normal, it's typical, and it's not in their heads (no matter what their doctors may think).

There are legitimate biological reasons why you feel the way you do.  Unfortunately, too many medical school professors were taught that CFS and fibromyalgia are diseases of whiny hypochondriac women and they continue to teach what they were taught, regardless that thousands upon thousands of research studies have found physical abnormalities such as viral damage in CFS patients.  Autopsies on CFS patients have found inflammation.  Fibromyalgia has been proven to be caused by a biochemical imbalance.  Regardless of what your doctor was taught, these are the facts, unadulterated by male views on stereotypical women's behavior.

If I can help one person avoid being victimized or permanently disabled by the erroneous philosophy that CFS is a non-stigmatizing name for depression, then I've been useful.  If I can help one patient get the right treatment, then I've been useful.  If I can get one doctor to change his mind and acknowledge that a 105 fever means a virus, not depression or laziness, then I've been useful.

I know there are those who will never change their minds until it becomes too uncomfortable for them to continue to maintain their stance, because the prevailing wisdom will finally have changed from a psychological cause (which is bolstered by studies in which the patient pool is intentionally polluted with psych patients) to a biological cause (as is demonstated when the patient pool requires a viral/infectious onset, as I had).  As JoAnn says, "porcine musical education is a waste of time".  But as more doctors become aware of the facts -- some from reading this blog, some from reading research their patients found via this blog -- there will be more doctors who are forced to accept that they were wrong.

I'm an educator.  Many of my closest friends are teachers.  And that's all I'm trying to do with this blog, is teach people that CFS and fibromyalgia are not psychiatric problems, are not work avoidance, and cannot be explained with misogynistic excuses because they also affect men.

Sunday, May 18, 2008

CFS and Exercise

Dr. Cheney has always said not to do aerobic exercise with CFS, but you have to do something so your muscles don't turn to jelly.  I do stretches and resistance exercises and have been told that I "can't have CFS, because I have not lost muscle strength" (which is another of those misconceptions based on seeing only patients who truly are deconditioned because they define exercise only as aerobic, which causes problems, and therefore don't do anything).  I can mosey, but I cannot walk far at a normal pace.

Here are three experts discussing the subject:  (and, these three doctors confirm what was recently shown by researchers, that CFS patients were actually more active than average and therefore need "permission" to do less, rather than the prevailing non-specialist assumption that we're lazy and need to be forced to do more).

Doc to Doc:

The "Skinny"on Exercise and CFS

Exercise can be a tricky topic in the care of patients with CFS.   On the one hand, exercise can lessen pain, improve sleep and increase energy levels.   Deconditioning due to lack of activity only serves to undermine an already challenged body.   On the other hand, one of the classifying symptoms of CFS is postexertional malaise, with significant exacerbation of symptoms following heightened activity.   At times, these increased symptom levels can last for days following exertion.   Not surprisingly, many people with CFS express extreme concern at the suggestion of exercise as a treatment for the illness, fearing their physician will simply push them to join a gym and "hit the treadmill."    Unfortunately, some medical professionals-not fully understanding the complexities-take that misguided approach.   With such concern and apparent misunderstanding on both sides of the examination table, three CFS-experienced clinicians share some practical advice on approaching exercise appropriately and effectively.

What role does exercise play in your treatment for CFS?

Lucinda Bateman, MD, Fatigue Consultation, Clinic, Salt Lake City, UT

Exercise plays a critical role in my practice because it is such a double-edged sword-beneficial but tricky-and must be constantly addressed. During almost every visit, I ask patients what they are doing to maintain their physical strength and conditioning. That gets us talking.

Nancy Klimas, MD, University of Miami, School of Medicine, Miami, FL

Exercise is important, both in the day-today management of symptoms and in the overall ability to improve over time.

Susan Levine, MD, Internist and, Immunologist, New York, NY

The role exercise plays in my treatment of CFS patients depends mainly on the following factors: (1) the severity of their fatigability based  on a subjective assessment of how long they can function at a particular task, such as grocery shopping or walking, before pushing the limit of overexertion; (2) motivation and accessibility factors, such as availability of a gym, a pool, stationary equipment or even an exercise buddy;  and (3) whether they have associated disorders that might mitigate the benefits of exercise (such as cardiac problems).

Do you define exercise differently when treating CFS and, if so, how?

Bateman:  We often think of exercise only as aerobic activity (walking, running, swimming, hiking, etc). I try to redefine exercise into three components: stretching, strengthening and aerobic activity. That gives all CFS patients something they can work on.

Levine: Exercise is different for patients with CFS.   I would rather even use the word "movement"  or name the specific activity that I want  them to perform (such as walking or swimming).   Movement promotes endorphin release and blood circulation, improves balance and increases strength. But it should be done cautiously, and the duration of the activity should be kept at a minimum level, with only small increments of activity added every six to eight weeks.

What concern or resistance have you experienced from CFS patients when it comes to exercise? How do you address these concerns?

Bateman: Resistance comes from negative  experiences with exercise itself and with physicians  who don't seem to understand what the  person is going through. My patients and I  spend time every visit talking about their pain,  fatigue, sleep, mood, function and payback symptoms-addressing exercise in the context  of that communication.   I think everyone understands that their bodies  become weaker without exercise, so it's easy  for them to imagine how that might compound  their CFS.  I encourage patients to "start low and go slow," reminding them that they have all the time in the world to become stronger but can "crash" very quickly. I counsel them to do the amount of stretching, strengthening and light activity that will not cause any rebound symptoms the following day. We also discuss ways to do exercise lying down, seated or in water to avoid orthostatic intolerance.

Klimas: Most CFS patients will have concerns, and some are quite fearful of an exercise program.  This is because all CFS patients will relapse with overexertion, and most are in the habit of pushing themselves over that invisible line of "too much." But I believe patients who understand the reason they are so exercise intolerant are able to stick to a program that doesn't go over that invisible line.

Levine: Exercise is often a dirty word to the CFS patient. But if I phrase it in a way that sets limits on what I expect, they are usually comfortable.   For instance, I define regular exercise  for CFS patients, initially, as three to five minutes daily of mild aerobic activity, such as walking on a flat treadmill or walking around the block.   There are also ways to make exercise less threatening for the patient. Taking a small pet on a walk or going out with a spouse for a short stroll can be beneficial and enjoyable.  The key is a regular program, no matter how short a duration, at about the same time every day.

What do you see as the greatest exercise-related risk for people with CFS?

Bateman: The greatest risk is a patient getting  discouraged and falling away from all forms of exercise.   I also think some patients can develop more chronic pain or other symptoms from forcing exercise when they shouldn't.   I encourage patients to listen to their bodies, avoid pushing too hard when it might cause the most problems but come back to what they can tolerate when feeling better.

Klimas: I have come to recognize three basic risks. First, patients who push too hard every day never have a good day and are not able to improve because they constantly cross the line of overexertion.   By backing off a bit and working up gradually, they will find that their overall exercise tolerance improves.   Second, patients who have been burned by bad exercise experiences can become afraid to try and, therefore, never gain the benefit of an effective program. They don't even know where their line of tolerance might be.   Third (and most common), patients who are clearly benefiting from a program, then relapse (no matter what the cause) are sometimes dramatically discouraged. When one of those fluke relapses hits them, they are emotionally crushed and struggle to find the motivation to start exercising again. The good news is that they don't lose all of the ground they so painstakingly won. But they are temporarily set back in their training program. Encouragement is key.

Levine: I think the greatest risk is a patient performing too much exercise on a day when he or she may feel better. Patients have to be told not to exceed their limits and to keep short diaries of their progress.

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